Lady with a special mission:
My own daughter has suffered
from renal failure since she was three years old and so my interest in the
donor card programme is deeply persona. After a third attempt at a kidney
transplant in London’s Guys Hospital I was offered an interview with Mrs
Elizabeth Ward, president of the British Kidney Patients Association, in order
to prepare a feature for national magazine.
By her own admission Mrs Ward
is a formidable lady and so I have to admit to a certain sense of apprehension
as I prepared for our meeting. When the brief meeting was over my whole being
resounded with shell shock- rather than my interviewing her Mrs Ward had
clearly interviewed me and I'm not sure if I passed the test ! However, it was that strong personality which
was directly responsible for the introduction of our familiar donor card.
Outwardly Nigel and Elizabeth
Ward have everything in the world: a lovely house overlooking rolling
countryside, a successful business, holidays abroad and a full social life and
three three wonderful children. It was as their son Timothy, affectionately
known as Timbo, was about to enter Harrow School that the family had to cope
with the devastating news that he was suffering from a life threatening kidney
disorder.
As one who's had to accept the
same reality, I can empathise with Timbo's parents but in 1994 medical science
has come a very long way from when the Ward Family had to cope with the
situation. Then funding for renal dialysis provided but a few machines and organ
transplantation was in its infancy. It looked as if Timbo did not have a very
long life ahead of him.
Timbo attended school with the
son of Sir Keith Joseph, then Minister of Health. When Elizabeth was sent a
kidney donor card in use in the United States she began campaigning for a
similar system to be introduced in Great Britain. She wrote many times to Sir Keith,
at first suggesting, that urging and finally bullying him towards the introduction
of a kidney donor card.
The first renal transplants had
been performed in Boston, Massachusetts, as far back as 1954. Ten years later
the first operation was attempted in this country. But without a supply of
organs there was little future in transplant surgery.
In 1967 world attention
unfortunately focused on South Africa where Christian Barnard performed the
first human heart transplant on a 54 year old patient. The surrounding media
circus, failure rate and questioning of the ethics involved in such programmes
did little to prepare public opinion for transplant donor card.
There were those who found the
idea of spare part surgery repulsive, almost akin to cannibalism, while others
feared the removal of organs before the donor was honestly dead. Ignorance and
prejudice ruled over medical science.
Eventually Sir Keith Joseph
agreed to discuss Mrs Ward’s proposals and a card based on her own design was
launched in 1971 as the kidney donor card. I remember the one I carried from
the early 1970s, I must still have it somewhere, having to ask my father, as
next of kin, to sign his agreement on it. Like many relatives of the time he
was reluctant to agree. For others the reluctance became outright refusal.
A change of government saw
Barbara Castle and Doctor David Owen at the Department of Health. The
redoubtable Mrs Ward confronted them and the realisation that her husband could
refuse legal permission for her to become a donor appalled Mrs Castle
suffragette instincts. She demanded the condition be removed.
The next twenty years saw not
only transplants being accepted as by far the best treatment for chronic renal
failure but also the successful grafting of hearts, liver, cornea and more
recently the spleen. To meet the widening of science health minister Doctor
Gerard Vaugn oversaw the kidney donor card’s transformation into the organ
donor card.
But this was a change the campaigning
Mrs Ward did not exactly welcome. “The indelicate wording of the card makes it
look like a butcher shopping list !” She complained to me in the sitting room of her Surrey home and the headquarters of the British Kidney Patients
Association. And the widening of the scope most certainly denies in many cases
the use of donor kidneys.”
Unlike the heart and liver the
kidney is a resilient organ, it can survive for several hours outside the body
and can be removed quite successfully for transplant after the heart has
stopped beating. Mrs Ward went on to explain but this enabled relatives to
serve proper and dignified goodbye to their loved ones whereas now donors
bodies have to be clinically kept alive on a machine while the brain is dead
and the soul departed.
Even though an individual may
carry a card and fully desire to help others after his death by offering organs
for transplant, their wishes may not be complied with. Doctors faced with the
difficult task of breaking the news to the next of kin that their loved one is
dead often elect to avoid compounding matters by seeking permission to take
organs. Strictly speaking this permission is not required by law but doctors
simply will not proceed without it.
Professor Cyril Chantler of Guys
Hospital, possibly the leading paediatric renal specialist in the country,
explains: “… it doesn't seem to work very well and I am now personally
convinced that we should have an opt out system. In other words it should be
the convention, it should be the normal practise that after somebody has been
pronounced dead their kidneys can be used for others unless they have said they
do not wish it to happen.”
A Gallup Poll commissioned by
the British Kidney Patients Association shows 61% of the population firmly in
favour of such a system.
An opt out system already
exists in Belgium, Austria, Finland, France, Norway and Singapore. There was an
increase of 119% in the number of transplants carried out in Belgium during the
first year of the change.
For the kidney patient,
dialysis means being connected to a machine for three or more hours up to four
times a week and the almost impossibility of leaving a normal life. Professor Chantler
is quite clear, “To me the only satisfactory final treatment for somebody with
serious kidney disease is a kidney transplant, only kidney transplants will
restore normal life. Only a kidney transplant will restore normal life.”
Over five thousand patients
are currently on call for an organ transplant but last year only 2,730 of which
1765 were kidneys, transplant operations were performed. Many of those still
waiting will die before a donor is found. It is true that even with a
transplant some of them may still die but without the opportunity of a
transplant they are not even given a chance.
Mrs Ward son Timbo died
undergoing surgery in 1989 but call it destiny, call it divine intent, his life
was not without purpose. A devout christian, his mother, believes he was sent to
spur action towards have done the card and the Formation of a National
Association to promote the cause of kidney patience.
Although Mrs Ward now thinks
the donor card is moving towards becoming a failure I feel she is perhaps a
little too hard on the development of her own idea. While it may have many
failings, from the point of view of the 2730 patients who did receive a
transplant in last year alone it has been a miracle.
But what are the future ? Mrs
Ward is now campaigning furiously for the opt out system
advocated by Professor
Chantler and the government is taking a serious view of the proposals. However,
without the full support of the medical profession, in particular the
transplant surgeons, a change is not likely for a while yet, perhaps not for
another generation.
Until that time it is vital we
all give careful consideration to carried at all times a donor card. Do you
have one ? Have you told your relatives about your wishes ?
Sitting at her hospital
bedside my daughter turned to me and said; “Look Dad I have a donor card. I've crossed
out kidneys, they would not be much use to anyone but they can have everything
else !”
It brought a tear to my eye.
Having been given back to us by the miracle of a transplant the idea of losing
her in some tragic accident is unthinkable. But if it should be that I would
have no hesitation at all in seeing her wishes were carried out.
You can pick up a donor card
from your doctor's surgery, your local chemist shop or write to either myself
or Mrs Ward and we will gladly send you one.
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